Wednesday, 29 July 2015

We had yet another brutal winter, complete with hospital admissions, double ear infections, an almost pneumonia, and the flu.

I also suffered a miscarriage in the fall.

So this time around, I was a little apprehensive to talk about it, but also being a pregnant, working mother of a toddler... it was even more exhausting than I remembered, and the whole thing flew by so quickly.

Here's my "Don't say that I didn't warn you!" that the rest of this post is really long.

I contemplated about how much to share, and whether I felt ready to share it at all.

Last week, I wouldn't have been, but it's our first day home from the hospital and I also wanted to write it out so that I had something to look back on and remember the last two weeks that we spent in the NICU.

So here it is.

At 5am on July 11th, I was lying in bed and felt my water break. I told Shaun and my mom but told everyone to go back to sleep because there were no contractions for another hour. The weak contractions that started at 6am were 2 minutes apart and went from "we still have a long while before leaving for the hospital" to "holy crap, we need to go to the hospital NOW" over the course of the next 90 minutes. All the while, I hobbled around trying to pack because we were not so prepared (hashtag second baby). We were at the hospital by 9am and our girl came 11:45am, with no epidural, 2 and a 1/2 weeks early, weighing a chunky 7lbs4oz.

They put her on my chest but I was still in a haze of the relief of having just pushed out my kid, pain med free. I held her close but didn't have a chance to take a good look at her. Once they took her away to weigh, measure, and clean her off, they brought her back and said to Shaun and I, a sentence that changed our lives forever, far more than we ever imagined.

"We think your baby has Down syndrome."

"...how likely is it?"

"We think it's pretty likely."

Shaun almost fainted.

I just went blank.

All of the plans for our family that I had envisioned during the pregnancy flashed through my head. There were no indicators in any of the testing that was done, no discussions of the possibility. And yet there we were, 5 minutes after the birth of our second girl, in what would have been enough of a life changing situation, but with an additional circumstance that would further change us in ways that we never imagined. I didn't cry, get emotional, or panic, it was just all too much for me to comprehend. The doctors started talking about the different risks and complications that they would be checking for as a result of the suspected diagnosis. Congenital heart defects, thyroid issues, eye sight and hearing, as well as feeding issues caused by low muscle tone, which subsequently could cause low blood sugars. They also told us that based on how well she does in the next few hours, it was likely that she would be sent to the NICU. Still, in my mind I thought "but she was born so big, she's already showing interest in nursing, we won't end up in the NICU, that won't be us". So for the next few hours, we worked hard on trying to get some milk into her, and she was definitely trying. But by the evening, her blood sugar was starting to drop, and all of the sudden it became so low that they were rushing her to the NICU. For the next hour 3 nurses tried over and over again to start an IV, and even with the numerous pokes, she didn't even cry. She was so lethargic from the low blood sugar that she didn't have the energy to cry while they poked and prodded to find a vein. So I sat in the wheelchair beside her incubator and cried. I cried for my girl who couldn't even make a sound through the painful procedure, out of fear for all of the risks and possible complications to come, out of fear for all of the challenges we were about to face, and just a little bit out of pity for the unexpected situation that we were suddenly trying to wrap our heads around. So we started her NICU stay with her hooked up to a feeding tube, oxygen, an IV, and all of the probes and leads to check her vitals.

But even with the bumpy start, she proved to us (as we hoped she would) that she was a fighter and a healthy baby, who just happens to have a bit of extra genetic material to love. Her heart, head, eyes, ears, all came back without concern, and she showed everyone that (like her big sister...) she wanted to EAT. Yes, the progress was slow, but we saw an improvement everyday. While most of the medical staff cautioned us to be prepared for a prolonged admission in the NICU, she proved everyone otherwise. So just like the first delivery (albeit for very different reasons), we are home after two weeks and starting a new chapter in our lives.No, it wasn't what I had envisioned, and there is still SO much to learn and a lot of challenges we'll face. But so far, we have been incredibly lucky and fortunate. I'm thankful that we live in a country that has an accessible health care system, and for delivering at a hospital with incredibly supportive staff and facilities that allowed me to stay 24/7 for the 2+ weeks in order to work on feeding/nursing, for our family who despite the unexpected news, have been so accepting and excited for our family of four, and for our friends who have shown us similar support. And most of all, I am thankful for Shaun, who surprised me (in the best way possible) with his almost immediate acceptance and his calmness through the whole ordeal, and for my two happy, healthy, and adorable little girls.

It took me significant effort to even get to this place, this comfort level.

During my extended admission post delivery, I had psych consults and discussions with the Social Workers. I was on an emotional roller coaster, and often times a sobbing mess, especially as I walked from my room in the Delivery and Recovery Unit, seeing the happy families celebrating their new arrival, while I passed them alone, on my way down to the NICU.

But I've also met some incredible people in the last two weeks, who have opened my eyes to a whole new perspective and outlook on life.

I refuse to let our family be defined or limited by this diagnosis.

Yes, my girl has Down syndrome.

But this is not WHO she is, or will be.

It's just part of her traits, her characteristics, and I hope that she'll meet and even surpass our expectations if we don't limit her because of her extra chromosome.

Soon after we were given her diagnosis, Shaun sent me this essay that I thought was quite fitting for our situation.

Welcome to Holland

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who
have not shared that unique experience to understand it, to imagine how it would feel.

It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of
guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in
Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several
hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".

"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy.
All my life I've dreamed of going to Italy"

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of
pestilence, famine and disease. It's just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet
a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there
for a while and you catch your breath, you look around...and you begin to notice that Holland has
windmills...Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a
wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was
supposed to go. That's what I had planned".

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very
significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy
the very special, the very lovely things...about Holland.

So here's to a brand new trip of a lifetime.

Day 1 at home was sheer madness (as I imagine would be the case for most families bringing home a newborn...), but also full of happiness and excitement that we are finally together as a family of four.

I may not feel so optimistic every day, and I anticipate that there will be countless challenges ahead of us, but for now, I'm just going to enjoy being a new mom of two, and that new baby smell, her fluffy head of hair, her little baby sighs and noises, and share the excitement of my big girl finally being able to hug and kiss her baby sister, and find comfort in knowing that we can still do a lot of the things that I had envisioned during my pregnancy, just with a little bit of modification.

And last but not least, happy due date to our sweet girl.

In your two and a half weeks, you've already taught us patience, acceptance, and opened our eyes to a whole new world that we might otherwise have never known.